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Our Life

Tuesday, August 28, 2012

I just had to start with this picture because it is so danged cute! This is Baby having fun at our volunteer Respite Night at Friday's Kids here in our area. It is so amazing and my kids LOVE it just as much as we do. Volunteer here.

I am sure you are all looking forward to hearing how the start of school has been here in this household.

Me and school, we have had a love/hate relationship.

I LOVE that my kids are on routine again and have SO much help and activities.

I hate that I have to deal with the meltdowns they have after they get home from school because of the overstimulation and anxiety they have gone through throughout the day.

But, this year, so far, has been different.

With Brother starting Junior High and, frankly, a new life, he seems to be as happy as ever. He does still need his downtime of watching TV for a while afterward or time on his iPod in his room, but, hey, who doesn't? He even unloads the dishwasher everyday after his after-school-snack and TV time without any complaint. (smile) He loves his teacher Mrs. S and she has such a passion for her job, I love it!

It was so cute because Brother has been so excited about getting his own locker. Well, I guess, that since he is in Special Education he doesn't need a locker because they have their own backpack room in the class. He was very insistant that he get a locker so Mrs. S worked out accommodations with the staff to get him a locker and a combination and he is in heaven. He makes sure to pack his notebook, his folder and his FableHaven books 4 and 5 so that he can take them in and out of his locker whenever he has the chance. He is happy as a clam. I wish I could be a fly on the wall watching his eyes pop when he opens his locker everyday like it was the first time every time. Man, I love that kid!

Sister started off the first few days with so much excitement and anticipation I thought she was going to burst into confetti. That's the best way I can explain it, seriously. She was so excited, it was well, it was, just plain exciting!! But then she would get home happy and then immediately break down in my arms or would whine, cry and destroy anything in her path. I wrote in her notebook to put in some more sensory at the end of her day and since then she has been great. Woo hoo!

I was so nervous about Sister being placed in this Autism Unit, but she seems to be thriving so far. It really does seem to be an improvement to have her sensory needs implemented throughout the day without it being an interruption.

Baby even started her own little school-type thing. She has been going to Equine Therapy. It's pretty cool too because it just happens to be on the property right across from where my mom grew up. It is fun to be at a place that I watched so often from across the street at my grandparents. So when we went there today it brought back all those happy memories of my Grandpa Fred.

It is so weird to think that Baby is the only kid that won't have grown up with horses in the back yard. It feels so weird to have to go somewhere else to have her ride a horse. I am so happy with where we are, but I do miss having horses. We all do. So I am so happy that she has this opportunity through her early intervention program.

So to end my report I will say that all is well here... OK, most of it. Let's be realistic. There are videos strewn all around my floor in the basement, blankets cover the toys that are covering the floor next to the videos, crayons and paper look like a modern tablecloth on my kitchen table, sticky substance of different kinds are dotting my counters, Sister found out that flour and water make a great glue and made a large bowl full of it and put it in the sink, legos and books "neatly" line Sister's bedroom floor, 6 zucchini lay waiting on the counter to become part of some zucchini bread but I think they have given up the fight because they're starting to sag... This is real life, right? Or is it just Our Life?

So, let me rephrase the end of my report:
"All is well with the schooling situation so far."

Monday, August 27, 2012

You know when a bunch of girls (which by "bunch" I mean more than 2) get together we get giggly, hyper, giddy, goofy, and a little bit childish.

We get together and do things like we used to when we were younger.

Why is this?

Maybe it's just me when I get together with my sisters, my mom, my aunts, my friends or whomever but this is always how it ends up: laughing so hard I either cry or pee my pants. And it is usually peeing my pants. (And any woman out there reading this who has had a child will completely understand the reality and humor in that.) Thank goodness I am too decrepit to jump on a trampoline anymore or I'd be having my own water party... anyway... back to the subject at hand.

My mom, my sister, Kirsten, and I were off to a shower for our cousin. We were so excited to see them and we were so excited to be together without the kids.

Yeehaw!

We headed out and on our way.

Shortly after leaving, we realized we did not have the address to where this shower was. We figured we would be able to get a hold of someone that had the address within that 35 minute drive...

...

...

We finally parked in a random parking lot so that we could wait for a reply from some one instead of just driving around wasting gas.

We sat in the car.

Arguing, a little, on what we should do.

Thinking, a little, on what else we should do.

But, we hadn't prayed yet.

...

When my mom suggested praying I about fell over.

"Are you serious? Do you want us to pray for the address to just magically pop into our heads? That's ridiculous."

She assured my over-active anxiety that, "no, just that someone will call us that we have tried to get a hold of or something."

OK.

So we bowed our heads in the car in the parking lot.

My mom started the prayer.

Then she started to giggle.

Then we all started to giggle.

Then my mom could hardly get through the prayer because we kept giggling at what a silly thing we were asking in a prayer.

Then RRRRRIIIIIINNNNNNNGGGGGGGG!!!!!!!!!!

We stopped giggling. Stopped praying. Stopped laughing.

Could this be it?

For a moment we thought it would be a scene like from a movie.

But, nope.

It was my husband.

Calling to see if we found the address yet.

OK, so long story short we finally got the address.

Went to the shower.

Had a great time.

We talked, ate, sang, ate some more, talked more and just really had good time seeing family.

Then we were on our way.

We were still a little bit giggly so when I saw this crazy looking motorcyclist ahead I just had to speed up so we could catch up and get a picture. We were finally able to catch up to him and I handed my phone to Mom to take the picture. She panicked and almost dropped the camera when he turned to look at her. That was funny. But, then finding out afterward she actually got a shot off before fumbling in the end zone, was the best part.

So, we learn, over and over again (the hard way) that Sister can NEVER be left alone.

EVER.

But, does the lesson stick?

Maybe.

But, sometimes we are just downright tired.

And when Sunday comes, we "sleep in" before getting ready for church. (I say "sleep in" because that means we wake up at 8:30 instead of 6:30. Church starts at 9:30 and you would be surprised that even with 3 hours to get everyone ready, we still don't make it on time.)

Sister wakes up.

We know this because she turns on the hall bathroom light.

Does her stuff.

Comes in with wet hands (if they aren't wet, we immediately instruct her to go back to wash her hands), gets 3 inches from my face and stands there with her morning breath with a huge smile and waits for me to open my eyes and get all excited that she is awake. Then she'll ask for breakfast and a "woovie" which is a movie on Netflix from my laptop.

But, this particular morning I was just too tired to be a mom.

I just laid there while she tried to get me up.

I laid there as I watched her carry my laptop out my bedroom door.

I laid there as I hear the fridge opening, the silverware drawer close, things rattling and.... then I just dozed off.

When I woke it was high past time to get ready and I was a whirlwind of getting-ready-ness.

Then as I went to grab a banana I realized 2 of them were already gone.

...

Then I saw her face as she waited for me to see her creation.

She was so proud.

She even put it in a tupperware container (thank goodness).

I looked at it.

She was getting a little concerned, I could tell.

She didn't know if I would be proud of her creation or get upset that it took two bananas, two bottles of strawberry PediaSure, 4-5 slices of bread, a few cups of milk, a couple of eggs and flour... and I think a little bit of salt and pepper.

I put on my "better mom" hat and put on a big smile and said, "Wow! That looks awesome! What is it?"

"Banana pie!" she replied.

"Sweet! Let's take it to grandma's today for our dish to share!"

We forgot it.

So I took a picture of it so they could see what they missed out on:

Mmmmm....

Then, I know, I haven't posted anything on Brother and Sister starting back at school.

So, here is my first post that has to do with that.

I took pictures of them eating their breakfast of choice the first morning back to school.

Brother chose a hamburger paddy.

Sister chose waffles. (And don't think, even for a second, that I am cool. They are the frozen ones from Costco.)

The morning was even better because their daddy had made them "Going back to school" cards that were absolutely adorable. That is what is sitting by them at breakfast.

Brother's had a locker drawn on the front and Sister's had a yellow school bus.

I thought that was so sweet that Marc would do that.

He even made one for Baby that had a big heart and her name.

The kids were so excited they could hardly contain themselves. 7 am and they were bouncing around outside in the wind waiting for their busses. They take separate ones this year because they are at separate schools. I would have gotten pictures, but, honestly, I just wanted to enjoy the moment from a naked eye view instead of behind the camera so you will just have to imagine it along with me: grins from ear to ear, bodies shivering with excitement and wind chill, and squealing voices each time someone's bus went by, hoping it was theirs.

They really love school and Summer break is just too long for them. They have been ready for school to start since the day it got out.

It was fun sitting at our front picture window watching them be excited and happy for school. I sat there thinking how blessed we are to be in such a beautiful neighborhood surrounded by huge trees and mountains. I got excited as I looked out after Sister's bus left to see that there was a bright, red apple on one of our front yard trees. I ran out to pick it and had to pause to take a picture because it was peaceful and there were no kids trying to keep me from clicking away so I took one of my apple. I know, I took a picture of the apple and not my kids on their first day of school...

Wednesday, August 22, 2012

I had just been having a great time with my mom, sister and aunts at my cousins wedding shower and then we got the news that my mom's dad (my grandpa) just had another stroke that day. My Uncle Roy let us know that they didn't think he would make it much longer.

We (my Aunt Aleesa, Mom, Kirsten and my cousins Ruby and Anna) decided to stop by on our way home to see him for a bit.

I've seen my Grandma Ruby pretty sick, and thought she wouldn't live much longer and then she pulled through and it has been 6 years since that point.

I guess that is how I thought I would see my Grandpa Fred when we stopped in.

I thought he would be a little out of it, tired and would slowly turn his head to look at us as we walked in.

It wasn't like that...

at all.

It was dark in his room but there was a light near his bedside.

Not a lamp, or a candle.

A light.

He was silent when we first walked in and then when he realized, somehow that it was family he fought hard to try to communicate.

He looked transparent, pale and scared.

With this second stroke his throat has been paralyzed so he is not able to swallow. They had a patch on his neck that kept his glands from producing any secretions so that he wouldn't choke on his own saliva.

I had a patch like that after my hernia surgery that was supposed to keep me from being nauseous and sick post surgery. It helped with the nausea but my mouth was so dry that if I closed my mouth it all stuck together and felt like I was sucking on cotton balls. It was awful.

So as I watched my Grandpa cough and try to talk or anything at all with his mouth I understood how uncomfortable he was.

I started to panic for him just because I so vividly remembered that awful feeling.

And then I started to combine it with the thoughts of dying.

It was so hard to watch him as my mom took his hand and said, "Dad, this is Judy. I love you. Everything will be OK."

That's when my fear turned into tears.

I know that my grandpa has not always been the best and I even have held some resentment toward him for things he had done or said to my mom, things he had said to me and sometimes things he had done to others.

But, in that sweet moment when I saw my Grandpa's almost transparent eyes look to search for my mom's face and watched his hand twitch as he tried to hold hers every resentment or hard feeling I had for him washed away.

Suddenly I felt a voice telling me, "I need my Ruby." And I then blurted out to my Aunt and my mom that we needed to bring Grandma Ruby in and that Grandpa was scared. I felt it so strongly.

I cried really hard at that point, realizing the love that my Grandparents have for each other.

I can't even begin to tell you the many stories of the undying love my Grandma has for her "Freddie."

Her love and devotion is a beacon that should be seen for all the world to understand true love. Even when life was as hard as it could get she never, ever left his side.

In that moment, I truly realized that their love is true love. Devoted and eternal love.

He was scared to cross over into this next life by himself.

He needed her by his side.

Just like she has always been.

There was a few moments for whatever reason where I almost felt like I was alone with him and I leaned over, kissed his cheek, and told him who I was and that I love him. He was able to turn his head and look at me and it felt as if he looked deep into my soul and in that split second I felt as though he was saying sorry for any wrong he had done and telling me he loved me.

I wonder if that is what my mom felt when he looked at her.

We then went to Grandma's room to see if we could work out to bring her into his room and realized it just wasn't going to happen. We talked to her for a moment and sang a song to her. By this time, my Aunt Rosanne, Aunt Kathy, and Aunt Jane had joined us and it was touching singing to her in her room while she slept.

As we sang I looked at all the pictures hanging on her wall that some one had put together in a collage on two different posters.

Pictures of my grandparents in happier and healthier times.

Memories of sleeping over at their house, hearing Grandpa's stories, smelling Grandma's cooking, eating her home-canned peaches, remembering how her apron bubbled over he little pot belly stomach and wondering if she every went anywhere without her apron on, listening to my Grandpa laugh and helping him feed pigs and throw grain to the chickens. I even remember all the fun contests and races he would set up for us grandkids and the grin on his face as we succeeded. He was so proud of his kids and all their talents, still is.

Then we went back into Grandpa's room and were quickly reminded of his suffering.

I cried some more.

Sad?

Yes.

Scared?

I think so.

I had never been near death before and I think it is actually more peaceful than I had ever thought.

They have given him 10 days to live.

There is nothing they can do for him.

I only hope that before he dies he can be with his Ruby, here in this life, one more time.

Friday, August 17, 2012

I am constantly amazed with the youth in this era. I know that there are still prejudices and misunderstandings, but it seems that there is so much more awareness of kindness toward other youth with disabilities.

When I was a teenager I was nervous around those with special needs, and frankly, didn't know much about it all. Maybe I was sheltered. Maybe I was naive. Maybe (oh heaven forbid I am going to let know how really old I am now) 22 years ago there just wasn't as much advocacy for children with disabilities as there is now. I am pretty sure it is a mixture of all those things, but more of the latter.

There is one young man, in particular, that this post is about and I will call him "MrSuper."

He had invited Brother to celebrate his 13th birthday by going out with him, his mom and a few other friends to get ice cream. I was so impressed that he would want to do this and that he truly thought of Brother as a friend and not just a project. When the time came for them to pick Brother up to go out for ice cream I had neglected, that day, to put out the picture schedule to give him a fair warning that he would be going out of his comfort zone to a gathering at the ice cream shop... so he fell apart. He refused to go. I felt so bad because it really was my fault for not preparing him ahead of time.

The great part about this is that MrSuper was not going to give up on him and waited in the car while I tried to convince Brother to come.

It was still a no-go.

I reluctantly went out to tell MrSuper and his mom that Brother would not be joining them today and thanked them for the invitation. With that, MrSuper's mom offered to bring the party to Brother. She said they would go get the ice cream and bring it to their house where Brother is comfortable (because he has been there a few times to hang out).

I was so impressed by that and got excited assuming that this would totally work for Brother.

30 minutes went by and when they came back to pick Brother up for the second time MrSuper talked to Brother and invited him to come. I was watching through the upstairs window as all this was going on outside. I was hoping that the conversation would go better without me out there to make Brother feel the extra pressure. I watched MrSuper walk away slightly dejected but a smile still on his face. I was so happy that he even tried and tears of joy had already welled up as I walked got up to thank MrSuper for his efforts and to apologize that Brother wasn't joining in... but then MrSuper's mom got out of the car and started to make efforts to encourage Brother to come with them. She was doing everything perfectly, a no pressure approach with lots of love and care and little eye contact. It was awesome. I hadn't even told her to do that, she just did. The tears streamed down my face as I watched her efforts and yet he still declined the offer.

She came to our door with Brother's cup of ice cream and before much could even be said I just cried and hugged her because of how impressed and touched I was by their efforts even though Brother was doing everything he could to shut them down.

I don't know that I would have made that much effort. I would hope I would have, but don't know if I would.

So, the moral of this story is:

You don't always get the happy ending you think you are going to get when you go above and beyond the call of duty, but your efforts are seen by someone watching from an upstairs window and He will see your true gesture of love. Your efforts may seem unrewarded, but they are not unnoticed.

As a side note: I want to tell the youth who attended the "Junior High Back To School Night" as soon-to-be Peer Tutors in Special Ed and specifically requested to tutor Brother, I cannot explain how much this meant to him and how much easier it will be for him when he starts school next Tuesday.

Thursday, August 16, 2012

Finally after 5 months of complete-and-total-melt-down-never-ending anticipation, Sister finally had her official Birthday Party. She has been talking about her birthday everyday since March and was relentless in her pursuit.

You could say we were both relieved that we were finally to that wonderful day!

She wanted a LEGO party so we set to Pinterest and saw some ideas I thought I could handle and we chose to do a LEGO pinata, a LEGO cake, color LEGO pictures and play a LEGO game. So, really, we kept it VERY simple. Really, I have to keep it simple because as much as she thinks she wants to have a big to-do, I know that she will fall apart if it is too big.

So we colored while we waited for people to come.

Then we played a building game where they took turns unwrapping packages of LEGOS and had 10 seconds each to add to the building.

Then we broke the pinata.

Then we opened presents.

And last we sang "Happy Birthday" and ate cake and ice cream.

Simple, right.

It lasted a total of an hour.

She was so happy and having so much fun, but I could see the tell-tell signs of her becoming over-stimulated.

And, yes, she was.

After it was all over she completely melted down and it was a long day trying to get her back into the regular groove.

Am I sad that we had a party for her.

Heck no!

She loved it in the moments of it and I LOVED seeing her pure joy as her friends showed up to have fun. She was so thrilled with each gift I seriously could have bottled up her overflowing joy and sold it!

Monday, August 13, 2012

And they are all things she has heard me, Marc, Brother or Sister say and she says it exactly the same way we do but it means something and is not just jabber.

Real words and requests like:

"Mommy, Look"

"You're funny"

"What's this"

"Where's Mommy? She's coming back?"

"Where's [insert name of preference here]? She's/He's gone?"

She understands what I am saying, like "let me help you," "let's go take a nap," do you want milk," "let's go to bed," or "get in the car."

This is so huge that she is understanding us.

Miraculous.

Momentous.

Melodious.

It is so amazing to finally have your almost-three-year-old be able to understand that you are trying to help her with something instead of freaking out that her world is over.

It is so neat to really hear her voice and all the cute little inflections she puts into her phrasing.

She is starting to do what you hear so many other Fragile X children do and that is mimicking. They are amazing mimics. It is quite a fun little talent to watch a lot of them do, actually. In fact you should watch this cute little video on the National Fragile X site "Fragile X got Talent." (Brother has a little spot in it, and there are so many amazing talents in there. I love to see that our kids can succeed.

I try really hard, though, to just be excited that Baby is talking and not worry that much of her talking it actually echolalia.

Saturday, August 11, 2012

On the last day the California Cousins were here we just had to end with a big bang!

We went to a place that has these foam pits with trampolines, trapezes, and a rock climbing wall. It was a great time for most of us. I say, "most" because Eddy didn't have to much fun because she tried a flip off the trapeze and landed wrong and wasn't really in the mood to have fun after that. But, the rest of us tried to trudge on and have a good time!

After jumping it was right into swimming. It was a great day to cool off an we even had a good time between swims snacking and socializing, and a lot of hugging from Sister.

We had worked up quite an apetite so we went to Grandma and Grandpa's for pizza and who can end a trip without roasting marshmallows over the fire pit and a good side walk chalk drawing by Grandpa Gary?

It was a great time having more cousins here and Brother and Sister have missed them very much. I love seeing relationships become stronger among family, especially ones you aren't able to see very often.

So Sister is now 7 years old! Because her cousins were here we had a birthday party with the family a little early so that her cousins could join in on the celebration.

Sister was so excited about having a birthday party she could hardly handle it. I love her excitement. It is so contagious. She was so grateful and happy with each gift she opened and really had a good time. We even got to sing happy birthday to her! She was a bit nervous but she made it through. She wanted us to sing so I didn't want to disappoint her.

you can see her nervousness, top middle

After she blew out the candles everyone got to frost and decorate their own cupcake. Baby really enjoyed the frosting and, I think, Melly wanted in on the fun.

After the festivities I took some pictures of all the grandkids that were there.

Grandpa Gary got all the "behind the scenes" shots for me

You'll notice one extra little person, he wasn't there and Lynne and Gary wanted a complete photo of the grandkids, so with a texted photo from the parents we got our little Bear in.

This one is definitely my favorite, Bryan's face adds to the whole candidness of it.

Then the games began and we had a LOT of fun altogether playing frisbee, jumprope, tug-o-war and a bunch of other great activities. Good memories were made!

Marc was on call most of the week the cousins were here visiting and that included the weekend. There was all kinds of fun going on down Grandma and Grandpa way, where we just moved from at the beginning of the year, so I decided to sleep over with the kids at their house so they could have as much fun with their cousins as possible during their short stay.

Am I crazy to try sleeping over at my in-laws by myself with 3 crazy kids? Nah!

So Grandma Lynne watched the girls while I took Brother to the Rodeo with his cousins, Grandpa and his Aunt Amy and Uncle Frank. (Oh and don't mind the dates on some of the photos, Gary needs to reset the date on his camera...)

Brother was so happy to be there, and especially happy that Kelsey was there (as always). Still a lot of "sibling" love there, I think.

Brother wanted to get in on our "boot" picture

Brother always has a flair for the dramatic

Then later Uncle Joel and his kids joined us on the bleachers to watch the rodeo.

It wasn't much of a rodeo this year but the scenery was fantastic and it was fun to be together. It has almost become tradition with the California cousins because they are usually here this time of year.

That's Brother at the bottom. He is running with the horse...

Then, because I didn't have the girls with me, we were able to stay and watch the fireworks. They were really cool and Brother thought they were amazing.

We got home and Lynne had the girls asleep and Brother was all excited to stay up and watch a movie with his cousins.

Baby ended up being awake pretty much all night and since me and the girls were all sleeping in the same bed it was a VERY long night. Thank goodness Sister slept through all of it. I couldn't even get Baby to fall asleep when I took a long drive with her in the car at 1:00 am. Thank goodness the parade wasn't until 10am so she was able to sleep for a bit since she finally nodded off at 4:30am.

So, although it was 7:30 when Sister decided to greet the day, I still woke up bright-eyed and bushy-tailed and took on the challenge of bringing the 3 kids to the parade. All the kids came equipped with their plastic grocery bags for the candy they were to collect and they were all very excited about it. I was actually surprised that the kids all stayed together by the side of the sidewalk to wait for candy and I only had to grab Baby a handful of times from running into the parade floats... ya, that is actually good.

Brother loves to wave to the "princesses"

My favorite part, though, was when Uncle Joel's Credit Union entry came by, Brother ran out to join them to pass out candy. I was so proud of him for wanting to do something so out of his comfort zone. Jessie and the kids were passing out candy too and that helped having them there. Jessie told me later that Brother was smiling and waving to everyone he knew, and because it was in our previous home town there were many who knew him and were happy to see him too. I am so proud of Brother and all the new things he has been doing!

Brother is the one in the black shirt behind the car

Well, as good as all that went I was still VERY tired and, frankly, a little edgy from lack of sleep so when we went to the carnival after the parade to pick up Brother and see my sister's booth she had set up for face painting you can imagine who frazzled I was as Baby continued to scream, flail and run around everywhere uncontrollably. I had to wait for Sister to get there because she had gone home with Grandma and Grandpa for a quick potty run. So while Brother sat at the face painting booth with Jessie I took Baby to the playground hoping that that would help out. It was nice for a few minutes as I was able to talk to some friends that were there and it was good to see there faces, but Baby was quickly finding more and more ways to make my life miserable. So when I heard that Lynne and Gary were back with Sister, I took Baby in tow screaming and flailing. My forehead was breaking into a sweat, tears were welling up in my eyes, and I am sure that I was forgetting/unable to suck in my sloshy tummy (sloshy from the snow cone Gary bought me earlier) and low and behold I see another old friend ahead of me. I want to say "hi" to be nice, but I am desperate to get out of there in one solid mommy piece. I thank everyone for the "fun" weekend, grab Sister by the hand, she starts screaming, Brother is whining because he doesn't want to leave his Aunt Jessie's side and Baby is now trying to pry my arm from around her and his wailing and starting to get slimy because she is also sweating in the heat and exhaustion of the fight.

But, the old friend (who does NOT read this blog) I was trying to pass by ended up right in front of me and she wanted to catch up on how everything was going and tell me about the news in her families life. I was trying to hold it together as we talked amongst 3 whining children but I finally just had to tell her that I really needed to go. So I turned to leave and she grabs my arm, looks at my stomach, and says very excitedly, "Are you having another one?"

...

It must have been the "glow" (you know how when a pregnant woman sweats they call it a glow)

Maybe it was the emotions written all over my face.

Or maybe, just maybe, I haven't lost as much weight as I should yet, because as much as I'd like to blame a snow cone for my tummy overflow, it just doesn't work that way.